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Addyson. She has a list of diagnosis's to include: Epilepsy, Autonomic Dysfunction, Colonic Dysmotility, Bilateral Hearing loss, a rare periodic fever disorder and more. She has had more than 2ft of her colon removed and had an ileostomy for 2+ years.

 

She now has an appendicostomy and a G tube. She has been treated at NIH, Boston children's, CHOP (children's hospital of Philadelphia), Children's National and HOPKINS. We also have a specialist in Georgia that we see every 6 months. It's been a journey as Addyson's been sick since day 1. She has had over 15 sedated procedures, 6 MRIs, 2 CT scans, Over 45 days NPO, multiple Med changes, 20 NG tube removals/insertions, Multiple ECHOs/EKGs, but surprisingly only 1 AMBO ride ever. She has been in the hospital for over 100 days throughout the past 5 years.

 

She is possibly looking at open heart surgery if we can't get her aortic root to stop in enlarging. And she has a pectus repair surgery coming up within the next year or two.

 

She is a warrior and is super strong. and she loves softball.


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